Wednesday, March 31, 2021

Advance Care Planning? Meh. - Part 2

by Drew Rosielle (@drosielle)

This is Part 2/2 of a couple posts about advance care planning (ACP). The last post outlined why there are really good reasons to believe that ACP (completion of health care directives and the healthcare conversations that occur around healthcare directive (HCD) completion, implemented on a broad scale) does not lead to any better, patient-centered outcomes, particularly when evaluated as a health intervention to be applied across a population (which is how ACP is typically conceptualized and researched).

In the prior post, I perhaps obnoxiously promised that I thought one of the most important ACP research studies to occur has just been published, although I think it's important for reasons that weren't necessarily intended by its investigators.

The study is in JAMA Internal Medicine and was published a couple months ago.

If you recall from my first post on ACP, one of the challenges with ACP research has been confounding in observational studies. Take an observational study showing that people with HCDs are more likely to have a longer than average hospice length of stay -- that may be true but we don't know why it's true. It could be true because completion of the ACP casually lead to the longer hospice LOS. It could also be true because patients who are inclined towards ACP completion are also inclined towards wanting less 'invasive' EOL care; both of those measurable phenomena stem from underlying personal/social characteristics which presumably emphasize planning, acceptance, surrender, and specific notions of dignity at the EOL which center preferences around being at home (etc) and not being on machines (etc), 'quality over quantity,' what have you.

One of the tricky things about that is that this sort of confounding may even creep its way into ACP randomized trials, because of the possibility that many patients who are skeptical of ACP or otherwise disinclined to engage in ACP-like activities won't even agree to participate in an ACP trial in the first place. Ie, that the current ACP research is enriched with subjects who are already sort of ACP-accepting, because why else would you put yourself into such a study? This seems like a legit problem and one could even wonder if one of the issues with the prior ACP RCT research showing very little in the way of positive patient-centered outcomes is because such research is only investigating pro-ACP patients anyway who are as a group disinclined towards 'invasive' EOL treatments at baseline so it's tough to show any 'benefit' between the group who got an active ACP intervention vs those who didn't.

The JAMA IM study utilized a design to try to mitigate that sort of confounding: they prerandomized subjects before obtaining consent, but still compared the 2 groups on the basis of initial randomization, not whether the patients actually consented and received the intervention (this I learned is called a Zelen design). This is tricky so I'll unpack the Zelen design a bit. The idea is you want to study the effects of a real-world ACP intervention, eg what would be the impact of implementing an ACP program aimed at high-risk patients in a healthcare system, say. If you approach patients about the study to get consent, a whole bunch of patients will decline to participate, for all sorts of reasons, including because some are actively disinclined to do ACP. So those folks never enter the study, and you only study 'pro-ACP' people, and you can't really understand how your intervention would actually affect the entire at risk population. With prerandomization you randomize half the at-risk population to the active group initially, then approach the active group subjects for consent. Within the active treatment group, some will consent to receive the ACP intervention, some won't, but when you analyze the data you compare the entire active treatment group (both those who consented to receive intervention + those who declined it) as a whole vs those randomized to routine care because that mimics the actual effects of your intervention in 'real life.' All this is ethical because all the data essentially comes from administrative health care data and everyone just gets 'routine care' unless they actively agree to the ACP intervention.

The study itself investigated community-dwelling older patients in a 5 county area of North Carolina, and looked at patients only with significant comorbidity/frailty. The ACP intervention was a Respecting Choices ACP program involving a telephone-based nurse-led ACP education visit, followed by the nurse accompanying the patient & a caregiver to a primary care visit where the PCP completed a ACP discussion with prompts to discuss prognosis, disease understanding, unacceptable states at the EOL, and patients' preferred treatment limitations (eg if they wanted a DNR order etc). Providers had an EHR template/platform to document all this. Subjects in the control group received usual care, and their providers had access to the EHR ACP platform but of course no specific actions were taken encouraging/enabling them to use it.

This is a really, really strong study design compared to some ACP trials. I read the methods section and was like 'Damn, they did this one right.' In particular because it used both a nurse-led education intervention plus staged a prognosis/'goals' discussion with a provider.

The primary outcome was new documentation of ACP discussions in the EHR after randomization. They measured a variety of secondary outcomes too including healthcare utilization.

They randomized 765 patients. Of the 379 randomized to the intervention group, about 90 weren't able to be approached for consent to participation (eg they couldn't locate them, etc). Of the 294 approached, 146 consented to the intervention and 139 completed the intervention. Patients had a mean age of 78 years, 60% were women, 17% Black/80% white.

They crushed their primary outcome: 42% of patients randomized to the intervention group had ACP documentation in the chart vs 4% in the usual care group. They collected some data on patient rating about the quality of ACP communication and patients generally rated it very high.

Nothing else though seemed to be different between the groups. About 10% of the entire studied population died in the study (median follow up time of 304 days) and there were no differences in the care they received (as measured in the study: ED visits, hospitalizations, etc).

(In Part 1 post I wondered about studying ACP as a suffering-reducing intervention, and those sorts of outcomes weren't investigated in this study.)

So, top level summary: this was a really well-designed, well-done, RCT of an ACP intervention which showed it did lead to more completion of ACP but did not impact other measured outcomes about the care patients actually received.

The question remains for all of us, though: So what? If you think ACP is intrinsically a patient-good then this is a great outcome. But as I discussed before, there is not any sort of clear evidence from the well-done ACP trials that completing ACP changes things that our patients actually care about: reducing suffering, reducing unwanted/burdensome healthcare interventions at the EOL. This current study is another top-notch, well done, study of a comprehensive ACP intervention which could demonstrate no change in these patients' lives apart from having more ACP documented. Yes, they did not measure every patient-centered outcome they could have, but that is not an argument that we should be treating ACP like some standard of care. Instead, best, it should be an investigational intervention, not ready for widespread implementation. If ACP was some sort of drug or medical device and you did a study aimed at getting more people the medical device, and showed in fact that your well-designed intervention successfully lead to more patients getting the medical device, but nothing else measured about the patient's well-being changed, we'd all be like Ok fine study but why should I do this in the absence of patient benefit? Same with ACP.

So why do I think this study was one of the most important ones in recent memory? Fundamentally, I think it's because this study is the best data yet we have that having done ACP is a good proxy for patients wanting 'less invasive' care at the EOL but doesn't in itself change anything.

This is because of their Zelen design and an incredibly damning (to ACP) exploratory analysis they mention, that compared patients within the randomized-to-being-offered-the-active-intervention group who received the intervention to those who didn't. They found that those patients in the active group who agreed to go through with the ACP interventions had fewer hospitalizations and ED visits than those who declined to. Ie, in the randomized population about half those subjects did not consent to the ACP intervention, and yes those subjects' EOL care looked different from those who consented to receive the ACP intervention. This makes you think maybe the ACP intervention did something. But you need to remember that there was an entire other control group! The people who refused the intervention were not the actual control group! That is, if you compare the entire randomized group to the entire control group (which itself presumably contained an equal measure of ACP-interested and ACP-not interested patients as the randomized group), there were no differences in overall outcomes. Ie, looking at this across the entire population, the ACP intervention made no difference, presumably because the control group itself contained just as many ACP-interested patients as the randomized group. I can't think of any better, available evidence that ACP interventions don't change patient outcomes than this.

All we're doing is capturing a group of patients who weren't going to allow themselves to die in the hospital regardless.

No one is saying that ACP activities don't benefit some patients. I've met some patients myself who have benefitted. But millions of dollars are spent each year getting people to fill out these forms. The opportunity cost of that is gigantic. Imagine, if, 25 years ago, when ACP was really kicking off, people did high quality research which came up short, abandoned ACP, and instead all the resources we've spent on it the last generation were spent on investigating other, better ways to mitigate the suffering of our patients with advanced illness, and provide them with the sort of care they actually want. That's what is at stake here.

For more Pallimed posts about advance care planning.
For more Pallimed posts by Dr. Rosielle click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota and M Health Fairview in Minneapolis. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

Wednesday, March 31, 2021 by Drew Rosielle MD ·

Monday, March 29, 2021

Advance Care Planning? Meh. - Part 1

by Drew Rosielle (@drosielle)

Several years ago I was giving a talk in front of a mostly palliative care audience and asked, "How often do you find yourself, in the care of your patients, saying to yourself something like 'Thank the stars this patient has a healthcare directive (HCD)'?" The overwhelming answer was a bunch of shrugs and people agreeing occasionally (but not routinely) HCDs are helpful.

For something that seems so central to our work, why is it that so many of my colleagues that day were lukewarm about their utility?

It's fair to say that the last few months have been a controversial one in the hospice and palliative care communities when it comes to ACP, triggered by Dr Sean Morrison's editorial in Journal of Palliative Medicine: Advance Directives/Care Planning: Clear, Simple, and Wrong.

I've been mulling over that editorial for a couple months now and then noticed that, arguably, one of the most important advance care planning (ACP) studies in recent history has just been published, although probably not for the reasons the investigators were hoping for, and I thought I'd write about where we're at a bit for Pallimed.

This post is going to be about my own thoughts as to why I mostly agree with Dr Morrison's editorial. The next post will be about this tantalizingly important paper that was just published.

If you haven't read Dr Morrison's editorial, please read it now--it's not that long and it seems to be open access at the moment. Here's his top-level argument:

As of May 2018, 80 systematic reviews of advance care planning covering >1660 research studies had been published and the National Institutes of Health and the Patient-Centered Outcomes Research Institute had funded >750 research studies at a cost of >$300 million in taxpayer money (an average of $1 million/year). Foundations have spent untold millions. What evidence has all of this research and money wrought? The >1660 studies and 80 systematic reviews on advance directives/care planning have produced only limited and low-quality evidence that advance directives/care planning can actually result in changes in patient, family, clinical, utilization, or financial outcomes. Like the study published in this month's journal, the majority of high-quality research has failed to find a strong link between advance directives/care planning and outcomes of importance. Similarly, despite 30 years of diverse interventions and programs, two-thirds of adults do not have an advance directive (an imperfect yet reasonable surrogate for occurrence of an advance care planning discussion).

I mostly agree with Dr Morrison about this, and will flesh out my thoughts as to why. I need to note that I didn't run any of this by Dr Morrison so any claims I'm making here about what he thinks are my interpretation of his editorial, sort of my own internal conversation with his editorial, and nothing more; I'm not claiming to speak for him. Also--JPM published many letters in response to his editorial, all of which are worth your time reading.

I.
Takes like Dr Morrison's are really controversial (in part) because I think people (clinicians in HAPC), use different definitions of ACP. I sometimes think when people hear stuff like "ACP is not helpful" they think people like Dr Morrison is saying something like "Discussing prognosis and planning for future care with your patients with advanced and serious illnesses is worthless." I.e., this is sort of a 'Big Tent' definition of ACP which includes activities associated with completion of health care directives + really any clinical activity that's in the realm of discussing the future (eg discussions of prognosis, preparing patients for future decisions/what is likely to happen to them in the future, even goals of care discussions). I'm pretty sure though that Dr Morrison and the other detractors of ACP, when they say there's no evidence it actually helps patients, are really talking about the narrow definition of ACP (completion of HCDs and the clinical/healthcare discussions that occur adjacent to HCD patient education and completion), and are not criticizing the idea we should be discussing prognosis / the future with our seriously ill patients.

Also, because I know some of you will be reading this and asking, "But what about Physician Prders for Life-Sustaining Treatments (POLSTs)?"-- for all intents and purposes the following discussion is not really about the POLST movement (which is not to say POLSTs have the sort of evidence behind them we'd like either, but that's another story). All this isn't really about Ariadne's Serious Illness Care project either, and importantly I'll note the Ariadne investigators are doing their best to study their intervention in multiple settings and are not advocating wholesale population wide implementation of their program in the absence of evidence (which is what was done with ACP the last decades).

II.
One could note that there really isn't great evidence for talking with seriously ill patients about prognosis/planning for future care either. That is sort of true, there is some research but not enough and not overwhelmingly convincing (one could look at the recent Ariadne Serious Illness work for some examples of what I mean by sort of true) but honestly I'm less 'worried' about that because as a physician I have a professional obligation to discuss prognosis with my patients. I can't help them make informed care decisions otherwise, and honestly I'm less interested in outcomes research focused on if I should be talking with my patients about the future than how I should be talking with them about the future. I want to learn better/more effective/more compassionate/more accessible/more timely/more culturally- and patient-centered ways of having those conversations, not whether or not I should be having them.

At the same talk I mentioned above, for instance, when people admitted they rarely have found ACPs to be helpful in real clinical practice, I asked people how often are they glad that someone before them had had a realistic discussion with a patient about the future, and everyone indicated that they found this routinely helpful of course.

III.
The same is not true with narrow definition ACP (and from here on out when I say ACP I am only talking about the narrow definition). ACP was adopted as a healthcare innovation really without the sort of scrutiny and demand for proof that it actually helped patients that we'd demand for other innovations like, say, LVADs. The acceptance of ACP as unimpeachably a good, obvious, thing for our patients is so entrenched that people have funded entire careers off of studying how to get people to do ACP, without there being reasonably clear evidence it actually improves patient-centered outcomes.

Much of the ACP research out there is focused on projects/methods to get patients/clinicians to do ACP. I'm not claiming this is bunk research, some of it is really high quality work, however I am claiming that it's high quality work which seems to assume we are benefitting patients by helping them do ACP yet we don't actually yet know that. Importantly here, if you are reading this and thinking to yourself something like I just saw a patient the other day who seemed to benefit in some way from ACP I am not saying you're wrong. I've met that patient too. But, like with anything, acknowledging there are a few patients which benefit from something is very different than concluding something should be a routine, integral part of medicine, implemented widely as a public health intervention, and worth the immense amount of healthcare and research investment of time and dollars spent on it.

I think Dr Morrison's thesis is "ACP is not worth the time/money/effort that has been spent on it as a public health intervention," not "ACP has never helped anyone."

IV.
Some ACP research has been about 'congruence,' whether doing ACP activities predicts whether you will later on get the care/treatments you at a prior date said you would want. Especially in the early days of ACP most of the talk was about 'autonomy' and making sure people get what they want, etc. (Indeed, much of the early talk about ACPs was really centered on things like patient rights and autonomy.) There is a moral and philosophical discussion to be had about that topic and whether this is something we should actually be trying to achieve (because patients wishes change over time, and how can patients really make informed decisions about future health states without actually being in such a state, and does it even make sense to ask patients to sort of 'pre-decide' healthcare decisions which on a good day are bleedingly complicated even for cognitively intact and emotionally stable patients). It's an interesting topic, but it doesn't really matter anyway, because there's no high quality research into congruence showing ACP does anything anyway.

To take a couple examples, there is this very well done Australian study from 2010 in the BMJ (the "Melbourne Study") which did a comprehensive ACP intervention in high risk hospitalized older patients. If you read the abstract you'll think that the intervention improved 'congruence' (meaning patients who did the ACP intervention were more likely to get congruent care than those who didn't). If you actually read the study you'll realize that what the intervention group had was better documentation of their wishes so it was easier to 'prove congruence for them (we don't know if the control group had 'congruent' care because their wishes weren't documented) and we don't actually know if the ACP intervention changed any patient care. The 2nd example is the only RCT that I'm aware of the highly revered Respecting Choices ACP model which looks at congruence. This was a RCT of 300 high risk patients (severe heart failure or were on dialysis) who received usual care or the Respecting Choices intervention. This carefully done prospective trial which followed patients long term showed absolutely no improvement in congruence. Think about this one--this wasn't a study of healthy elders, this was a study of people at really high risk of dying (ie the people most likely to benefit from ACP), 300 of them, and yet they couldn't show any difference. It's research like this that Dr Morrison is pointing to I believe when he says ACP has not been shown to benefit patients.

V.
Many of you are probably aware though of all sorts of positive ACP research. People who have HCDs are, compared with those patients who don't have them: more likely to have DNR orders at the end of life, more likely to spend more time enrolled in hospice, less time in ICUs at the end of life, etc. We have a couple decades of research showing this in multiple settings. The problem with this is that nearly all this research which has shown these lovely associations is observational, subject to major confounding. And there is every reason to believe there is huge confounding at play in this sort of research. That is, patients who are open/inclined towards participation in ACP activities are probably more inclined to want 'less intensive' EOL treatments. Think about your own patients, there is a group of them for whom participating in ACP is pretty easy, they want to do it, it's emotional for them but they are committed to it without much encouragement from us, etc. I think there's every reason to believe that the average patient like that is also far more disinclined to want 'invasive' EOL treatments than patients who will not participate in ACP. What this ends up meaning is that having a HCD may just be a proxy for also being disinclined to want 'invasive' EOL treatments, and the actual process of completion of the HCD doesn't impact care one way or the other because these patients already are the folks who are inclined to enroll in hospice earlier, etc. Again, when you do prospective, controlled research, it's much more difficult to show any patient-centered 'benefit' or change in outcomes, apart from the fact that more ACP is documented, even when you are using one of the most highly investigated and validated ACP tools out there, such as in this trial.

VI.
I disagree with Dr Morrison on one major point--he seems to be advocating that we wholesale abandon ACP as a clinical and research endeavor. I think there is one domain of patient outcomes which is really under researched, and ACP may really help. This is the possibility that ACP's main benefit to patients/families is essentially a palliative benefit to reduce iatrogenic emotional suffering we in healthcare cause our patients/families due to our decades' long abandonment of our dying patients by forcing them to make decisions they don't want to make. Because we have moved in the last few decades to a situation in which we have decided that desperate, grieving family members are the defacto best people to decide, for instance, if and where tubes should be inserted into their dying family members' bodies, we have caused tremendous suffering, and ACP may be a way of mitigating that suffering. I think this idea has potential and it has increasingly been a subject of investigation in the last decade, which I'm glad to see, although it's still not being investigated routinely. For example the Melbourne Study, while it didn't clearly show any other benefit, did show decreased stress and anxiety symptoms in family members who participated in the ACP process.

This is presumably what Ira Byock meant when he said "I have an advance care directive not because I have a serious illness but because I have a family.” Ira, of course, might be on to something there, and it's been frustrating to me that so few investigators have taken up that outcome as a primary focus of ACP. Admittedly, it's a bit obscene to say it's just iatrogenic suffering here which ACP might mitigate, of course it isn't, and there may be emotional and social benefits outside that--families talking about what's important together, memory and legacy making that can occur adjacent to ACP completion, etc. What I am essentially proposing is that ACP could be studied in a way that's sort of similar to how the Dignity Therapy investigators approach their intervention. ACP is not Dignity Therapy, however I'm arguing it could be investigated as a sort of analogous suffering-reducing, meaning-making intervention.

Importantly, I am not proposing here that we just shift uncritically from saying ACP is good not because it's all about 'honoring'/'respecting' choices (the pre-decisions, autonomy model), or because it reduces unnecessary healthcare costs / keeps people out of ICUs when they are dying, but because it reduces suffering. It's premature to say that. We can't put the cart before the horse. ACP may yet be worthless as a broadly enacted healthcare intervention, and we should continue to consider any benefits hypothetical until proven otherwise

For more Pallimed posts about advance care planning.
For more Pallimed posts by Dr. Rosielle click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota & M Health Fairview in Minneapolis. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

Monday, March 29, 2021 by Drew Rosielle MD ·

Monday, March 22, 2021

On the Value of Social Work in Palliative Care

by Vickie Leff (@VickieLeff)

Another year, another study proving the value of the palliative care social worker. Edmonds et al (2021) found that when a social worker was involved in a palliative care consultation, whole-person care components were more likely to be addressed, including addressing psychological (82% vs 18%) and spiritual needs (92% vs 8%) and documenting advance directives (90% vs 10%). This adds to what we already knew: involvement of social work impacts quality of care and patient satisfaction (Auerbach, 2007; O’Donnell et al., 2018).

It surprises me that despite much research and team role development, palliative care team members may not be aware of the importance of the palliative care social worker. And yet, as a Hospice Social Worker, in the year of the pandemic, I was considered non-essential. I was not the only one. Around the country, I heard stories of many palliative care and hospice social workers being sent home. Unfortunately, many articles had to be written this year arguing that the social worker is essential (Guerrero 2020; Lipe 2020; Abrams 2020; Gewirtz 2020). Still, so many of us continue to be asked: What does a palliative care social worker do?

If what you know about social workers comes from TV you would think we primarily work for child protective services. If all you know of us is what you see in your ambulatory clinic you might think a social worker is only helpful for ordering a patient oxygen or a rolling walker. These misconceptions are common. After all, the profession of Social Work is represented in many different fields of practice. Our educational training varies and there are many levels and degrees one can have to be called a social worker.

There is a wide range of variation for social work practice in the healthcare setting. Hospitals have social workers as case managers doing discharge planning; some are employed as behavioral health specialists, substance use experts and counselors, and population health managers; some clinical social workers are on Palliative Care teams providing extensive psychosocial care; and some are cognitive behavioral therapy experts in the outpatient setting. Quite a wide gamut. This broad range of practice is both a strength and a challenge for the social work profession because it can make it difficult for others to understand our value.

As March is social work month, let’s spend some time reflecting on the value of social work within the palliative care team. So here is what we do…. (this is not all inclusive!)

Broadly, we provide psychosocial care to patients and families. We are mental health providers who are trained to facilitate family meetings, manage family dynamics, and assess and treat anxiety and depression. We provide counseling to patients, children, and families. We assess for pain, spiritual needs, and advocate for a clear plan of care. We have advance care planning conversations and help to locate resources for patients and families.

We have an expert understanding of the social determinates of health and engage in cultural curiosity, often helping reframe concerns for our team members. For instance, we interpret medical information for the patient and family (think of your patients asking, “What did they just say?”). We coach surgeons prior to a “difficult” conversation, sharing our insight about family dynamics, use of language, and culture to guide them. We listen to the moral distress from bedside nurses in ICU units, offering strategies for well-being. We are often the team member who takes responsibility for team wellness and reflection, helping our colleagues identify their own reactions to difficult cases.

Palliative care social work has come a long way. Like our physician and nursing colleagues, we now have our own evidence-based certification: the APHSW-C. We have a national organization of 1,000 members – the Social Work Hospice and Palliative Network (SWHPN) and over 10 social work fellowships across the country, to train post-masters social workers in specialty level palliative care.

All palliative care team members listen with their own attention, intention, and biases. That is surely the beauty of working as a team, learning and depending on each other to provide the best care. As Rosa, et.al. suggests, we have an opportunity, right now, to become transdisciplinary teams “co-creating a unified framework for delivering palliative care that transcends disciplinary perspectives.” (Rosa et.al., 2020) This transcendent palliative care team requires that we all commit to having a shared understanding of each other’s value. While social work may be a large umbrella, our role in serious illness care is clear and rooted in data. Please stand with us and use your voice to tell others about our value: We are crucial members of the palliative care team and we are essential.

For more Pallimed posts by Vickie Leff, click here.

For more Pallimed posts about social workers, click here.

Vickie Leff, LCSW, APHSW-C is the Executive Director of the Advanced Palliative & Hospice Social Work Certification Program; she is also an Adjunct Instructor at the UNC School of Social Work, Chapel Hill. She still thinks that running a 6 hour marathon is actually a really good finish time.



References

Abrams, L. S., & Dettlaff, A. J. (2020). Voices from the Frontlines: Social Workers Confront the COVID-19 Pandemic. Social work, 65(3), 302–305. https://doi.org/10.1093/sw/swaa030

Auerbach, C. (2007). Evidence that Supports the Value of Social Work in Hospitals. Social Work in Health Care, 44(4), 17–32. https://doi.org/https://doi.org/10.1300/J010v44n04_02

Edmonds, K. et al (2021). An Exploratory Study of Demographics and outcomes for Patients Seen by Specialist Palliative Care Social Work in the Inpatient Setting at an Academic Center. Journal of Pain and Symptom Management.

Gewirtz, R. (2020) As I See It: Social Workers are Essential personnel; So, why aren’t we talking about them? Retrieved from: https://www.telegram.com/news/20200330/as-i-see-it-social-workers-essential-personnel-so-why-arent-we-talking-about-them

Guerrero, L., Avgar, A., Phillips, E., Sterling, M. (2020). They are Essential Workers now, and should continue to be: Social Workers and Home Health Care workers during COVID-19 and Beyond. Journal of Gerontological Social Work. http://doi.org/10/1080/01634372.2020.1779162

Lipe, L. (2020) Social Workers are Essential Workers. Retrieved from: https://www.socialworker.com/feature-articles/practice/social-workers-essential-workers/

O’Donnell, A. E., Schaefer, K. G., Stevenson, L. W., DeVoe, K., Walsh, K., Mehra, M. R., & Desai, A. S. (2018). Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial. JAMA Cardiology, 3(6), 516–519. https://doi.org/10.1001/jamacardio.2018.0589

Rosa, W. et al (2020) Coronavirus Disease 2019 as an Opportunity to Move toward Transdisciplinary Palliative Care. Journal of Palliative Medicine, 23(10), pp. 1290–1291.http://doi.org/10.1089/jpm.2020.0306

Monday, March 22, 2021 by Pallimed Editor ·

Palliative Care Social Worker Infographic

by Pallimed Editor ·

Monday, March 15, 2021

What Remains of Edith Finch? - A Video Game Review

by Matthew Tyler (@PalliDad)

Fortunately for me, the pandemic has not interfered with my life-long hobby: video games. I finally got around to playing What Remains of Edith Finch, a game that received high praise for its short but engrossing Lovecraftian-esque narrative. What I experienced was a surprisingly insightful exploration of humanity’s relationship with death.

Coincidentally, I had just read BJ Miller’s opinion piece “What is Death?” in The New York Times and was struck by the parallels between it and What Remains. This game illustrates how one may “fold death into our lives,” and what can happen when we refuse to do so. As Dr. Miller says, “We really have only two choices: to share life with death or to be robbed by death.” What Remains doubles down on this sentiment by turning tragedy on its head and daring us to find beauty in every story (or video game), no matter how short.

What Remains centers on a young woman named Edith Finch who returns to her childhood home following the death of her mother. Now the last member of her family, Edith is searching for an explanation for the infamous Finch Family Curse. For reasons unknown, the tragedy of untimely death has stalked the Finch family for countless generations.

Over the course of the game, you explore the rooms of her deceased relatives in order to make sense of her family’s misfortune. Browsing journals and photographs of Edith’s deceased relatives momentarily transports you to the moment before each person’s death, allowing you to temporarily see the world through their eyes. A warning: these scenes are brief but intense and include death by suicide. While you do gain information about the circumstances of each family member’s death, many questions are left unanswered.

What I found more captivating than the mystery of the curse was the variety of ways the family copes with terrible loss. The game places particular focus on the narratives of Edith’s mother, Dawn, and Edith’s great-grandmother, Edie. Edie, now in her 90s, has lived in the family home since she and her late husband built it 80 years prior. Over the years she has lost her husband, five children, two grandchildren, and two great-grandchildren within the home. Instead of turning away from this massive heartache, Edie preserves each room as a memorial to celebrate the person that lived inside it. She refuses to repurpose these rooms for new family members, and instead tacks on new rooms to the house whenever needed. As a result, the house takes on a haphazard, other-worldly appearance as if it were a living organism.


Dawn, on the other hand, is terrified of her family’s past and eager to conceal it from her children. Rather than discuss death with her children, she seals off the memorialized rooms and refuses to talk about their relatives. However, as Dawn finds out and as we in palliative care know, it is impossible to insulate loved ones from loss forever. When Dawn dies, Edith is left to uncover her family’s history – and navigate the pain associated with what she finds – entirely on her own.

So often in palliative and hospice care we bemoan our culture’s aversion to the topic of death and dying. Experiencing What Remains and reading its overwhelmingly positive reviews gives me hope that the aversion may not be as strong as we think. On the contrary, it would seem there is a hunger to explore the existential in more ways than we realized -- even if some are slightly unconventional.


“If we lived forever, maybe we'd have time to understand things. But as it is, I think the best we can do is try to open our eyes. And appreciate how strange and brief all of this is.” --Edith Finch



What Remains of Edith Finch? is available to play on PlayStation, Xbox, and Windows (via Steam).



For more Pallimed posts on video games, click here.

Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games or making palliative care skits on TikTok.

Monday, March 15, 2021 by Pallimed Editor ·

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